The parents with the hardest choice of all

Charles Rodeck is a pioneer in foetal medicine, a field in which huge scientific advances can have a terrible emotional cost. Here he speaks frankly about the painful dilemma - to agree to a termination or take the risk of having a disabled child - which thousands of couples must confront every year

Sitting ramrod straight in his chair, George Woodall could not be any clearer. 'Cutting to the chase, if there's anything wrong with this baby at any stage, we don't want it,' he tells Professor Charles Rodeck, Britain's leading expert in foetal medicine. 'We want to have all the tests as soon as possible, regardless of how risky they are. We just want this over with.'

Lying on a bed next to her husband, Karen stares at the ceiling in silence. Still dazed by the speed with which her perfect world has begun to crumble around her, all she can think of is how light-hearted she was, two days earlier, when she arrived at her local hospital for her 12-week pregnancy scan.

'Almost as soon as the doctor began the ultrasound, I knew something was terribly wrong,' she told The Observer after her consultation with Rodeck. Within minutes, Karen says, she went from feeling happier than ever to more distressed and confused than she had thought possible.

'We were crammed into this tiny, dark room while the sonographer ran the probe over my belly, looking more and more worried and stern as the minutes ticked by,' says Karen. After what seemed like hours, a doctor was called, who told her the foetus could be carrying the extra chromosome that causes Down's syndrome. 'I just felt my body floating away from me,' she remembers. 'I couldn't believe what was happening,'

The Woodalls' journey was one of many witnessed by The Observer during a series of remarkably frank interviews with Rodeck, founder and head of the unit for foetal medicine at University College Hospital, London.

Rodeck, one of the men responsible for transforming Britain into a world leader in foetal medicine - the treatment and study of babies still in the womb - has never spoken publicly before. He not only revealed his most acute concerns about his industry to The Observer, but also allowed us unique access to the private world of the country's most advanced foetal medicine unit.

He revealed a world in which thousands of parents each year are thrown, desperately floundering, into the sea of huge technological advances of recent years. With record numbers of women having scans, and those scans able to identify a far wider range of foetal abnormalities than ever, more couples are being forced to make the most agonising decision of their lives: whether to keep a foetus that might be born into a life of the most appalling mental and physical disability, or terminate the pregnancy. Parent can be set against parent and can make demands of medicine and science that are simply not achievable. 'Nearly all pregnant women have a scan at around 12 weeks and most are enjoyable occasions,' Rodeck says. 'But it's surprisingly common for things to go wrong. When people talk about childbirth, it's always the normal births they discuss. But around 15 per cent of women miscarry and 2 per cent of all foetuses develop a severe abnormality.'

It is the couples carrying these 2 per cent of foetuses - there were more than 14,500 cases last year - who are likely to find themselves forced to play God with the lives of their unborn children. The decision is not just traumatic but far from straightforward: unless a foetus is suffering a particularly well-defined abnormality, it is impossible to predict how a condition will manifest itself in any child.

'Our diagnostic abilities have outstripped our therapeutic skills,' Rodeck admits. 'We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction. Very often all we can do is give parents two options: to keep or terminate their pregnancy.' Other options, such as attempting an operation in the womb, are still very rare.

Back in the haven of his calm consultation room, Rodeck delicately presents the Woodalls with what could send them towards choosing whether they want to abort their unborn child. True to George's earlier determination, the couple quickly agree to an amniocentesis, a test that detects chromosome abnormalities but carries around a 1 in 150 risk of triggering a miscarriage.

'This is all new to us and it's horrible,' Karen says. 'The amniocentesis could bring about the abortion of a perfectly healthy baby. We've been told we're high risk for having a Down's child, but so was our neighbour, and she went on to have a perfectly normal kid.'

The test, however, goes smoothly. For the next three days, the couple try to distract themselves, playing with their two older children and convincing each other this nightmare is nothing but a nasty blip in what will soon become a smooth and happy pregnancy.

Their optimism is misplaced. The test results came back with the news they were dreading: the foetus had an abnormality. Karen says the couple were paralysed by the brutality of the decision they were suddenly forced to make. Their hesitation, however, was only temporary. Two days after the results arrived, she had the termination.

'It's been horrific, but I've got no doubt we made the right decision,' she says a few weeks later. 'A Down's syndrome child would have been a huge strain on our family and caused severe hardship. We thank God we had the knowledge and opportunity to make the choice we did. We're already trying to get pregnant again and if the same situation arises, we'll make exactly the same decision.' The Woodalls might have been grateful for the options they were given, but other parents told The Observer they were devastated by what they saw as the inhumane decisions that the advances in foetal medicine forced them to make.

Hazel admits she came close to agreeing to a termination when she was told the baby she was carrying had such severe kidney problems that it would be condemned to a life of dialysis. 'To be given the choice whether to keep my son alive or kill him was appalling,' says the 21-year-old. 'I wish with all my heart they had not given me that option.

'I had fallen in love with my baby. He was our son. I could feel him moving around inside me,' she said. 'My partner could not come to terms with it. We went through a very rocky patch. I almost agreed to an abortion because I felt everyone was telling me it would be selfish to keep my son alive and in pain, just because I already loved him so much.' Hazel delayed making her decision and then, against all the odds, her 25-week scan revealed the foetus's urinary tract system had repaired itself. 'My son will still be born with a single kidney, but he can look forward to a relatively normal life,' said Hazel, now 38 weeks' pregnant. 'But I have to look him in the eye, knowing I had come close to killing him. I dread what that is going to feel like.'

The medical advances mean doctors are now able to monitor foetuses with far greater clarity, and analyse genetic and chromosomal abnormalities with great speed and accuracy. Huge improvements in non-invasive interventions have also dramatically reduced the risks of operations for both mothers and babies.

But, says Rodeck, there are still terrible limitations. 'I have to tell parents all the time that we just don't know or can't predict exactly how their child will be affected by any particular condition,' he says. 'Often we can't even give a name to the abnormality suffered by a foetus. Diagnostic features are not always identical. They don't present at the same time and can change as weeks go by.

'Even if we know the name of the disability, conditions are so variable,' he adds. 'You can see on a scan there's a problem with a kidney, for example, but not tell if that child will need mild dialysis or a complete transplant.'

Rodeck is still haunted by the memory of one mother who had been trying for years to become pregnant, only to be told her baby had an indefinable chromosomal disorder. 'She was desperately trying to work out how handicapped her child would be and begged me to tell her if he would ever be able to tie his shoelaces. I couldn't even do that for her.'

Couples trying to make the same decision often plead with Rodeck to tell them if their child will be able to lead an ordinary life, go to a mainstream school, or even be able to walk. 'These are such natural questions, but although modern technology takes us halfway there it cannot give us the whole answer,' says Rodeck. 'These couples have to make the agonising decision about termination without knowing for certain what quality of life their child would have.'

In foetal medicine this is just one of the terrible decisions couples must make. 'Sometimes the man wants to get rid of the baby while the woman does not,' says Rodeck. 'I might try to see the woman separately to make sure she knows that nobody, not even her partner, can force her to undergo this procedure.

'In empowering her, however, I have to try to ensure she understands that keeping the baby might well lead to break-up of her relationship,' he adds with a hint of despair. 'This world can be so horribly bleak.'

Rodeck finds it difficult to deal with parents who refuse to believe he will not be able to perform a last-minute miracle and deliver a healthy baby. 'Some parents try to push us into intervening even if we think it's not going to be helpful, and that can be terribly difficult for doctors to handle,' he said.

'Without that intervention, the baby might well have died in the womb or soon after birth. That would have been a tragedy for the parents, but at least they then would not have that child to look after, and their lives and the lives of their entire family would not have been dominated by a child with chronic and often devastating health problems.

'They hold their child's life in their hands, but sometimes the most loving thing is to let that life go.'

He has found it impossible, however, to convince Rakesh and Meera, a 22-year-old couple pregnant with their first child. 'For us, first is God and second is science,' says Meera. The couple are waiting to learn if their baby will suffer from a narrowing of the spine that could leave it paralysed from the legs down. 'I haven't slept since the diagnoses and have barely stopped crying,' says Meera. 'But I will never abort our baby because, however sick it is, science will be able to cure it and give it a good quality of life.'

The professor knows what he does is controversial. His is the specialism, after all, that is tagged by the anti-abortion lobby as the 'seek and destroy' unit of the medical world. To his critics he plays with the very stuff of life, advising parents. For those who believe abortion is wrong, whatever the circumstances, Rodeck's world appears one where medical practicality trumps morals.

'So-called pro-lifers are entitled to their views, but they are not entitled to force them on other people,' he says. 'What I cannot tolerate is when the Church gets involved.' He is infuriated by the recent demand from a Vatican cardinal that all Catholic organisations and individuals should stop giving money to Amnesty International in protest at their pro-choice stance for women who have been raped, were victims of incest or faced health problems, and comments by Cardinal Keith O'Brien, head of the Scottish Catholic Church, that terminations north of the border are equivalent to 'two Dunblane massacres a day'.

'It is that sort of moral blackmail which makes it difficult for people to be religious these days,' he says. 'The truth is that not all human life is totally sacrosanct. Nature has a mechanism called "miscarriage" which eliminates many of its early errors but it is not always totally efficient and so some of these errors survive. What we are trying to do is simply use technology to assist nature.'

Olivia Thomas agrees. When she discovered she was carrying triplets, she decided to reduce the number of foetuses. 'For the rest of my life, I will wonder about that third child, from its sex to the personality it might have had,' says Olivia, 38, from Reading, Berkshire. 'I will always feel guilty and ask what might have been. But I know I had to make that decision to protect the health of the two children I am still carrying.'

Olivia is acutely aware there are some who would disapprove of her decision - 'but it seems acceptable that I can structure my family in the way I choose'.

Even among Rodeck's own patients, not all agree with his view that couples should be given all the information possible and left to make their own decisions. Catherine Rose, for example, says she was almost unable to cope when she was told her partner had an inheritable chromosomal disorder that could cause their child to develop multiple and severe mental and physical handicaps.

'In the course of this nightmare, we've found out that my mother-in-law also has this genetic disorder,' says Catherine, from Essex. 'But because technology wasn't so advanced then, she didn't know about it and so enjoyed her pregnancies and went on to have perfectly healthy children. Although I've found out my baby is healthy and well, my pregnancy has been an absolute torment. I have been seriously depressed.

'The fact that the doctors don't seem to be able to give me simple answers just makes it all the more confusing, scary and worrying,' she said.

Rodeck has chosen now to speak publicly for the first time because he is increasingly concerned about the wider world of reproductive and pregnancy care. Sitting in his tiny office, piled high with papers, the man who first used ultrasound for diagnosing malformations in the Seventies is critical of the IVF industry for taking advantage of women desperate to conceive.

'The commercial world of IVF provision is very competitive,' he says. 'Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are unproven and may not work. This can become exploitation. Couples so desperately want to get pregnant they will pay for virtually any treatment they hope will increase their chances.'

He is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics. Rodeck says the extra hormones and steroids could be dangerous. 'You can't be sure what happens to a baby when you put unnecessary and unproven medicines into its mother's body,' he says.

Rodeck is also deeply worried by the quality of NHS care. 'Being pregnant and giving birth with the NHS can often be impersonal and isolating. The process has become an anonymous production line.' He cites last week's revelation that London's Royal Free Hospital receives an average of two complaints a week about abusive midwives and mistakes by doctors. 'The NHS needs a better level of staffing to provide more personalised care at all stages of a woman's pregnancy,' he says. 'This is a key factor in the likelihood of a woman requiring an emergency caesarean during labour - but that is precisely that sort of care that the NHS is failing to achieve.'

The fault is that foetal and maternity medicine are 'not a political priority. There have been Department of Health initiatives in everything from mental health to diabetes, but maternity care was belatedly tacked on to the childcare agenda and almost forgotten about.'

There are many hospitals across the country struggling with old ultrasound machines used by doctors without the training to use the equipment properly. 'So much effort has gone into making enormous advances but we need to make sure that technology remains our servant, rather than the other way round.

'Couples are put in the most agonising of positions because science goes just so far, but not far enough. We need more funding, more focus and more effort to help people at one of the most important moments of their lives. We're at a crossroads. I'm desperately concerned that we take the right path into the future.'

Some names in this article have been changed to protect identities.

Foetal medicine in figures

700,000 The number of women who become pregnant in Britain each year.

35,000 The number of those women who are told there is a risk that their unborn baby may have a serious abnormality. The abnormalities include cystic fibrosis, neural tube defects and Down's, Klinefelter's and Turner syndromes.

24 The legal limit in weeks for the termination of a pregnancy, unless the mother's health is in danger, or if 'severe abnormality' is detected.

2 The number of doctors who have to authorise a termination.

180,000 The number of terminations that are carried out in Britain each year.

1,800 The number of terminations carried out on the grounds of disability.

100 The number of late terminations - after the 24-week limit - that are carried out in this country each year.